Joe’s Story

As we prepare for our first Lilabean Foundation event in Kansas City on June 27th, we are honored to introduce you to Kansas City native Joe Ludwikoski.

Joe Ludwikoski’s mother remembers having “real conversations” with him before he was even two years old. “I would say he was excelling in every area,” his mother, Mary, remembers. “He was so darn smart for his age … and was showing some amazing signs of intelligence.” Joe, who is the fourth of five children, was developing like any other two-year old boy, and even advanced developmentally.

Joe loved listening to music and singing songs, and he loved reading books with his parents and siblings. Along with being mentally strong, Joe was also an active and exhausting typical two-year-old boy. He was always running around, kicking and throwing balls and was even starting to ride a scooter with his older brothers and sister.

“He was a master escape artist,” Mary said. At just two years old, Joe had figured out how to get out of every door in the house. “Baby locks were no match for him,” she said.

Up until this point, there were no clues as to the heart-wrenching diagnosis that would soon be made.

Things changed for Joe and the Ludwikoskis last August when Joe began vomiting suddenly one morning. It became clear to Mary and her husband, PJ, that the vomiting was more than a stomach bug. Over the next few weeks, Joe would have vomiting episodes that would last for 36 to 48 hours. Mary and PJ made several trips to the emergency room with Joe, but they did not get answers.

By the end of last September, Joe had gone from a healthy 32-pound little boy, to a 24-pound sickly child. He had started losing his balance and was completely exhausted all of the time. Terrified, Mary and PJ begged their pediatrician to admit Joe to a hospital. “We could not take another night worrying that he was going to die during the night,” Mary said.

Joe was admitted to Children’s Mercy Hospital on Oct. 1, where their worst fears were confirmed. Mary and PJ were told that night that Joe had a tumor that was blocking the flow of cerebral fluid from the brain to the rest of the body. He would need surgery immediately in the hopes to relieve the pressure on his brain. He was moved to the Pediatric Intensive Care Unit.

An MRI was done the following day, which brought more crushing news. The MRI showed that Joe had many more tumors in his brain, as well as his spinal column. He was diagnosed with Type 3/4 Medulloblastoma.

Medulloblastoma is the most common malignant pediatric brain tumor. It originates in the lower back part of the brain near the stem. Medulloblastoma tumors are aggressive and rapidly growing.

Joe had brain surgery to remove some of the tumor and to alleviate pressure. A significant amount of the tumor was removed. After surgery, Joe had a serious setback, which delayed the start of chemotherapy. Joe suffered from posterior fossa syndrome.

Posterior fossa syndrome is a collection of symptoms – typically occurring only in children – that can occur following surgery in the brain stem region. Symptoms include mutism, difficulty swallowing, mobility issues and eye movement problems. In Joe’s case, he was unable to talk, walk or move. The symptoms generally occur as soon as 24 hours after surgery and range from mild to severe.

Joe was able to begin his chemotherapy in late October. He had five rounds of high dose chemo. The chemo was very hard on his little body, Mary said. He had to stay in the pediatric intensive care unit for two weeks because of typhlitis, which is a life-threatening condition affecting the right abdomen. It sometimes occurs in people who are being treated by chemo. He also had numerous other side effects including a debilitating rash on his core that was extremely painful and itchy, a blood infection, high fevers, and nausea.

Joe’s 6th chemo treatment was a bone marrow transplant. He handled the transplant very well and did not suffer any secondary infections after the transplant. While Mary and PJ were quite hopeful that the chemo and bone marrow transplant completely cleared out the cancer, Joe’s parents received yet another blow.

Joe’s latest MRI in May showed that there are two remaining spots on his spine. While this is a marked improvement from where Joe was last October with numerous tumors in his brain and on his spine, it was not the news Mary and PJ were hoping to hear.

After several consultations with numerous doctors, Mary and PJ will be taking Joe and the rest of their children to St. Louis for the summer so that Joe can receive proton radiation therapy. Joe will receive radiation five times a week for six weeks.

In less then a year, Joe has endured so much suffering in part becasue the only treatments that are available to him are so toxic. Typically, radiation is not given in children under three years of age. Joe will turn three in July. This is not right, its not fair. It’s barely humane what he has endured. Let’s do something.

The Lilabean Foundation was created to help children like Joe through funding for research and additional treatment options. Doctors battling pediatric brain cancer need more treatment options, which can stop and kill the cancer without the debilitating side effects. This requires more research and funding. Brain tumors are the leading cause of cancer-related deaths in children 10 years and under, but only about one percent of the American Cancer Society’s public revenues are spent on pediatric cancer research. This is not nearly enough to help save the lives of the 11 children like Joe who are diagnosed with a brain tumor every single day. That is more than 4,000 children each year.

Children like Joe need your help. Click here to learn how you can help raise awareness and money for pediatric brain cancer.